{"id":3199,"date":"2019-05-16T16:17:00","date_gmt":"2019-05-16T21:17:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3199"},"modified":"2019-05-16T16:17:00","modified_gmt":"2019-05-16T21:17:00","slug":"breathe-with-md","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/organization-interview\/2019\/05\/16\/breathe-with-md\/","title":{"rendered":"ORGAN\u0130ZASYON: Breathe With MD"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/01\/Breathe-with-MD.png\" alt=\"\" class=\"lazyload wp-image-3200\"\/><\/figure>\n\n\n\n<p><strong>KURULU\u015eUN ADI<\/strong>:          Breathe with MD, Inc.<\/p>\n\n\n\n<p><strong>WEB S\u0130TES\u0130:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0<a href=\"https:\/\/breathewithmd.org\/\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\"https:\/\/breathewithmd.org\/ (yeni bir sekmede a\u00e7\u0131l\u0131r)\">https:\/\/breathewithmd.org\/<\/a><\/p>\n\n\n\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0  <\/strong><a rel=\"noreferrer noopener\" aria-label=\" (yeni bir sekmede a\u00e7\u0131l\u0131r)\" href=\"https:\/\/www.facebook.com\/BreatheWithMD\/\" target=\"_blank\">https:\/\/www.facebook.com\/BreatheWithMD\/<\/a><\/p>\n\n\n\n<p><strong>TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0  <\/strong><a href=\"https:\/\/twitter.com\/BreatheMd\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\"@BreatheMD (yeni bir sekmede a\u00e7\u0131l\u0131r)\">@BreatheMD<\/a><strong> <\/strong><\/p>\n\n\n\n<p><strong>KURULU\u015eUNUZ HANGI\u0307 LGMD ALT TI\u0307PI\u0307NE ODAKLANIYOR:\u00a0 <\/strong><\/p>\n\n\n\n<p>Nefes al\nMD ile Limb dahil olmak \u00fczere n\u00f6rom\u00fcsk\u00fcler hastal\u0131klar\u0131n (NMD) t\u00fcm formlar\u0131na odaklanmaktad\u0131r.\nKu\u015fak Kas Distrofisi (LGMD).<\/p>\n\n\n\n<p><strong>KURULU\u015eUNUZ KAR AMACI G\u00dcTMEYEN BI\u0307R KURULU\u015e MU? E\u011eER \u00d6YLEYSE, NE T\u00dcR:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n\n\n\n<p>Evet, biz bir 501(c)(3) kar amac\u0131 g\u00fctmeyen kamu yard\u0131m kurulu\u015fuyuz<\/p>\n\n\n\n<p><strong>NE ILHAM VERDI\nKURULU\u015eUNUZUN OLU\u015eTURULMASI<\/strong>:<\/p>\n\n\n\n<p>Breathe with MD \u015fu ki\u015filer taraf\u0131ndan kurulmu\u015ftur\nAndrea L. Klein, Klein'\u0131n 33. do\u011fum g\u00fcn\u00fcnde \u00f6len k\u0131z karde\u015fi Cheryl Lewis'in an\u0131s\u0131na\nMusk\u00fcler Distrofi (MD) ile ilgili uygunsuz bak\u0131m nedeniyle 38 ya\u015f\u0131nda do\u011fum\n2007'de solunum yetmezli\u011fi. Klein bu durumdan etkilenen daha fazla ki\u015fiyle tan\u0131\u015ft\u0131\u011f\u0131nda\nAyn\u0131 t\u0131bbi hatalar, solunum cihazlar\u0131na b\u00fcy\u00fck bir ihtiya\u00e7 oldu\u011funu fark etti.\nNMD toplulu\u011funda e\u011fitim. K\u0131z karde\u015finin hikayesinin\nNMD'den etkilenen daha fazla birey ve aileye ula\u015fmak ve bir ba\u015fka\nailesinin benzer bir kay\u0131p ya\u015famas\u0131n\u0131 engellemek. MD ile Nefes Al, bir\nbilgilendirici Facebook sayfas\u0131n\u0131 2014 y\u0131l\u0131nda a\u00e7m\u0131\u015ft\u0131r. K\u0131sa bir s\u00fcre sonra, ayr\u0131 bir Facebook sayfas\u0131na ihtiya\u00e7 duyuldu.\nFacebook destek grubu ve daha sonra bir web sitesi. MD sponsorlu\u011funda Dr. John ile Nefes Al\nR. Bach'\u0131n The Speak Foundation'\u0131n 2015 y\u0131l\u0131nda d\u00fczenledi\u011fi konferansta yapt\u0131\u011f\u0131 sunum\nNMD'li bireyler ve takip\u00e7ilerini b\u00fcy\u00fctmeye ve geli\u015ftirmeye devam etti\nG\u00f6rev. 2018'de Klein ve kocas\u0131 Anthony kendi paralar\u0131ndan yeterince biriktirmi\u015flerdi.\nkurumun yasal i\u015flem ba\u015flatmas\u0131 i\u00e7in gerekli olan ki\u015fisel mali\nTennessee'de k\u00e2r amac\u0131 g\u00fctmeyen bir \u015firket olan \"Breathe with MD, Inc.\" haline geldi. \u015eubat ay\u0131nda\n2019 y\u0131l\u0131nda IRS arac\u0131l\u0131\u011f\u0131yla federal vergi muafiyetlerini bir ABD\nkay\u0131tl\u0131 501(c)(3) kar amac\u0131 g\u00fctmeyen kamu hay\u0131r kurumu.<\/p>\n\n\n\n<p><strong>KURULU\u015eUNUZUN MISYONU NEDIR?<\/strong><\/p>\n\n\n\n<p>Breathe with MD, Inc.\nmisyonu \"solunum kas zay\u0131fl\u0131\u011f\u0131 ve semptomlar\u0131 hakk\u0131nda e\u011fitim vermek;\ntestler ve uygun m\u00fcdahale se\u00e7enekleri (yard\u0131ml\u0131 ventilasyon ve\nmekanik destekli \u00f6ks\u00fcr\u00fck). Odak noktam\u0131z non-invaziv ventilasyondur. \u0130\u00e7inden\ne\u011fitim \u00e7abalar\u0131m\u0131zla, NMD'nin a\u015fa\u011f\u0131dakilerden daha fazlas\u0131n\u0131 etkiledi\u011fi bilincini yay\u0131yoruz\nhareketlili\u011fi ve Karbondioksit (CO2) tutman\u0131n tehlikeleri hakk\u0131nda \u00f6\u011fretiyoruz ve\nventilasyon yard\u0131m\u0131 olmadan ek Oksijen (O2) solunmas\u0131.\"<strong><\/strong><\/p>\n\n\n\n<p><strong>HANGI HIZMETLER\nKURULU\u015eUNUZUN SA\u011eLADI\u011eI:<\/strong><\/p>\n\n\n\n<p>E\u011fitimin yan\u0131 s\u0131ra\nBreathe with MD, Inc. web sitesindeki bilgiler, kurulu\u015f taraf\u0131ndan bulunur ve\n\u00dc\u00e7 sosyal medyada makaleler, videolar ve di\u011fer e\u011fitici \u00f6\u011feler yay\u0131nlar\nplatformlar\u0131 (Facebook, Twitter ve Instagram). Ayr\u0131ca bir YouTube Kanallar\u0131 da var\nMD ile Nefes Al, Inc. taraf\u0131ndan geli\u015ftirilen videolar ve animasyonlu e\u011fitim grafikleri ile\ngeli\u015ftirir. Breathe with MD, Inc. kapal\u0131 bir Facebook sponsorlu\u011fu ve y\u00f6netimi yapmaktad\u0131r.\nya\u015fayanlar i\u00e7in \"MD ile Nefes Al Destek Grubu\" adl\u0131 destek grubu\nve sevdiklerini bir araya getiriyor. 1,000'den fazla ki\u015finin kat\u0131ld\u0131\u011f\u0131 destekleyici bir topluluktur.\nnon-invaziv ventilasyon, invaziv ventilasyon, di\u011fer solunum y\u00f6ntemlerini kullanan \u00fcyeler\nkas yard\u0131mc\u0131lar\u0131 veya solunum kas yard\u0131mc\u0131lar\u0131 yok. Sadece grup \u00fcyeleri g\u00f6rebilir ve\ngrup g\u00f6nderilerine yan\u0131t verir. Finansman sa\u011fland\u0131k\u00e7a, Breathe with MD, Inc.\nHasta ve aile NMD konferanslar\u0131, destek gruplar\u0131 ve benzer programlar\nhasta perspektifine dayal\u0131 bir mesaj iletmek, destekleyici t\u0131bbi bilgilerden al\u0131nt\u0131 yapmak\nEdebiyat. Kat\u0131l\u0131mc\u0131lar sadece bilgilendirici bir mesaj duymakla kalm\u0131yor, ayn\u0131 zamanda \u00fccretsiz\nlamine solunum bilgi c\u00fczdan kartlar\u0131, bas\u0131l\u0131 literat\u00fcr ve\nbazen bir hediye i\u00e7in \u00e7ekili\u015fe kat\u0131labilirsiniz.<\/p>\n\n\n\n<p><strong>SEN\u0130N NEY\u0130N\nEN \u00c7OK GURUR DUYDU\u011eUM ORGANIZASYON:<\/strong><\/p>\n\n\n\n<p>Breathe with MD, Inc. en \u00e7ok\nNMD ile ya\u015fayan ka\u00e7 ki\u015finin daha iyi bir hayatlar\u0131 oldu\u011funu s\u00f6ylemesi gurur verici.\nSolunum kas zay\u0131fl\u0131\u011f\u0131n\u0131n anla\u015f\u0131lmas\u0131 ve bu nedenle bak\u0131m se\u00e7enekleri\nweb sitesi, sosyal medya payla\u015f\u0131mlar\u0131 ve\/veya destek grubuna \u00fcyelikleri.\nBaz\u0131lar\u0131 bunun kelimenin tam anlam\u0131yla hayatlar\u0131n\u0131 kurtard\u0131\u011f\u0131n\u0131 s\u00f6yledi. Di\u011ferleri deh\u015fete d\u00fc\u015ft\u00fcklerini s\u00f6yledi\n'i bulana kadar ventilasyon yard\u0131m\u0131na ba\u015flamay\u0131 d\u00fc\u015f\u00fcnmediler. Bu\nbir g\u00f6revi yerine getirmeyi daha da tatmin edici hale getirir.\nkurulu\u015fun hizmet verdi\u011fi toplum \u00fczerinde olumlu bir etkisi vard\u0131r.<\/p>\n\n\n\n<p><strong>D\u00dcNYANIN KURULU\u015eUNUZ HAKKINDA NE BI\u0307LMESI\u0307NI\u0307 I\u0307STI\u0307YORSUNUZ<\/strong>:<\/p>\n\n\n\n<p>Breathe with MD, Inc.\nBireysel ba\u011f\u0131\u015flarla finanse edilir ve NMD'deki bireyler taraf\u0131ndan g\u00f6n\u00fcll\u00fc olarak y\u00f6netilir\nToplum. Misyonlar\u0131 konusunda tutkuludurlar ve a\u015fa\u011f\u0131daki hedeflere ula\u015fmaya kararl\u0131d\u0131rlar\no.<\/p>\n\n\n\n<p><strong>INSANLAR NASIL\nKURULU\u015eUNUZU DESTEKLEMEYE DAHIL OLMAK:<\/strong><\/p>\n\n\n\n<p>MD ile Nefes Al, A.\u015e.'nin\nen b\u00fcy\u00fck ihtiyac\u0131 \"sosyal yard\u0131m etkinlikleri\" ve payla\u015f\u0131lan bas\u0131l\u0131 materyaller i\u00e7in finansman sa\u011flamakt\u0131r.\nonlara. Bu etkinliklerde NMD'lerle ya\u015fayan bireyler ne oldu\u011funu duyarlar\ngenellikle solunum rahats\u0131zl\u0131klar\u0131na neyin yol a\u00e7abilece\u011fi konusunda hayat kurtar\u0131c\u0131 bir mesaj\ndaha da k\u00f6t\u00fcle\u015fir. G\u00fc\u00e7lendirilmi\u015f ve bilgi ile donat\u0131lm\u0131\u015f olarak ayr\u0131l\u0131rlar.\nsolunum kas zay\u0131fl\u0131\u011f\u0131 yolculu\u011fu ve kendi kendilerini savunmak i\u00e7in\nuygun solunum bak\u0131m\u0131. MD ile Nefes Al, Inc.\nen k\u00fc\u00e7\u00fck ba\u011f\u0131\u015f. Breathe with MD, Inc. adresinden yap\u0131labilir. Facebook\nsayfas\u0131ndaki (https:\/\/www.facebook.com\/BreatheWithMD\/) Ba\u011f\u0131\u015f d\u00fc\u011fmesi arac\u0131l\u0131\u011f\u0131yla veya\nweb sitesi https:\/\/breathewithmd.org\/donate.html. E\u011fer ba\u011f\u0131\u015f m\u00fcmk\u00fcn de\u011filse,\nolarak Breathe with MD, Inc. \u015firketini se\u00e7mek gibi yap\u0131labilecek ba\u015fka yararl\u0131 \u015feyler de vard\u0131r.\nSmile.Amazon.com'da destekledi\u011finiz hay\u0131r kurumunu, kurulu\u015funuz olarak se\u00e7erek\neBay'de \"Favori\" yapmak, ve\/veya eBay'de listelenen \u00fcr\u00fcnlerden herhangi birini\nsat\u0131\u015flar\u0131ndan hay\u0131r kurumu yararlan\u0131yor. Daha fazla bilgi i\u00e7in\nhttps:\/\/breathewithmd.org\/other-ways-to-help.html. B\u00fcy\u00fcmek ve daha fazlas\u0131na ula\u015fmak i\u00e7in,\nBreathe with MD, Inc. ba\u011f\u0131\u015f toplama gibi g\u00f6revlerde yard\u0131mc\u0131 olacak g\u00f6n\u00fcll\u00fclere ihtiya\u00e7 duymaktad\u0131r,\nSosyal medya platformlar\u0131 i\u00e7in i\u00e7erik d\u00fczenlemek ve sosyal yard\u0131m etkinliklerini koordine etmek.<\/p>\n\n\n\n<p><strong>EN IYI YOL NEDIR\nKURULU\u015eUNUZLA ILETI\u015eIME GE\u00c7MEK I\u00c7IN:<\/strong><\/p>\n\n\n\n<p>\u015eu adrese bir e-posta g\u00f6nderin <a href=\"mailto:BreatheWithMD@charter.net\">BreatheWithMD@charter.net<\/a>. ya da Facebook mesaj\u0131n\u0131zla <a href=\"https:\/\/www.facebook.com\/BreatheWithMD\/\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\" (yeni bir sekmede a\u00e7\u0131l\u0131r)\">https:\/\/www.facebook.com\/BreatheWithMD<\/a>\u00a0 <\/p>","protected":false},"excerpt":{"rendered":"<p>NAM E OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Breathe with MD, Inc. WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3200,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-3199","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>ORGANIZATION: Breathe With MD - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/tr\/organization-interview\/2019\/05\/16\/breathe-with-md\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Breathe With MD - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"NAM E OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Breathe with MD, Inc. 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